Karen will be sending out an email concerning The Gathering of Friends.
In it you will find the dates, motel info, etc. We
hope everyone will consider making the trip if it is possible for
you. We have already had some responses and several have
already booked their flights. We are so looking forward to
seeing everyone in Nashville, TN in October!!
Karen, Jamie and Linda(aka PHOTOLJT) of The Gathering Place
will all be here and we are waiting word on Kevin (akaWeather91)
our website manager. We hope you all are as excited about
meeting us as we are in meeting you.

Traveling
with the Alzheimer's Patient

Have
you thought about a vacation lately, but then decided against the
idea because you are caring for a loved one with Alzheimer's
disease? Well, I have good news! It is very possible
to travel with the patient by planning ahead and anticipating the
patient's needs. I've found a lot of great tips on
traveling with the Alzheimer's patient, and I would like to share
them with you!

Traveling
Tips

First
of all, you should consider the stage of the patient's illness,
behaviors that may affect traveling, and what type of things you
can do to make the vacation enjoyable for everyone.

Realize that even though you are on vacation, you will have many of the same
responsibilities you have at home. It will be to your
advantage to take along another person to share in the caregiving
duties with you.

You may want to think about vacationing in ways the patient was accustomed to
before they developed Alzheimer's. For example, if the
person has never been on a plane before, it may be wise to drive.
If the person has never been to a beach, you may want to steer
clear of that sort of vacation so as not to get the patient
scared and agitated. Try to set up a vacation similar to
ones that the patient has taken in the past.

It may be best to plan your vacation in small out-of-the-way places,
rather than to places with a lot of people and stimulation.
The crowded, busy places could possibly make your loved one
scared and agitated.

Avoid fast-paced sightseeing trips. It would be much better to plan a trip
that has as few changes as possible. Escorted tours would
be fine as long as the other members of the group realize you are
caring for an Alzheimer's patient and understand that you have
caregiving duties.

If you are not sure as to how your loved one will react to traveling, you
may want to take a short trip just so you will know what to
expect.

Try to arrange your accommodations so that if you have to leave early
because of illness or intolerance on the part of the patient, you
won't be held responsible for paying even if you don't get to
stay.

Make sure that family members at home have a copy of your itinerary.
It is also a good idea to locate doctors along your trip route,
just in case you would need medical help for your Alzheimer's
patient.

Be sure to advise the airlines, hotels, restaurants, guides, etc. that you
are traveling with a memory-impaired person. Some airlines
can arrange for a wheel chair and restaurants may be able to
serve special meals for your patient.

Make sure your patient wears some sort of identification at ALL times.
The easiest way to do this is to have a medical ID bracelet
engraved with the patient's name, address and phone number.
You may also want to have something concerning the fact that the
patient has Alzheimer's or is memory-impaired engraved on the ID.

If you are touring with friends or local groups, you may be able to rely on
help from them on occasion with your patient. Never leave
the patient unattended for ANY reason, and never ask a stranger
to keep an eye on the patient. The stranger may not know
how to react to difficult behaviors, plus the patient my become
scared or agitated by someone he or she doesn't know.

Make sure you take safety precautions when it comes to dealing with your
Alzheimer's patient. For example, if you are traveling by
car, it would be useful to have automatic locks or you may want
to simply remove the locks from the patient's side of the car.
You may also want to keep in mind that power windows may be a
danger to the patient.

Since you are the primary caregiver, you can decide how to tell your loved
one that you are taking a trip. You may want to talk about
the trip several days in advance, or it may be best to tell the
patient just before you leave. It varies according to the patient.

If your patient travels better at specific times of the day, you may want
to plan your trip accordingly. It would also be a good idea
to take breaks along the way for snacks, so that the patient
won't become bored.

If you are traveling by air, train or bus, have a friend drive you to the
place of departure. Make arrangements with the friend to
take care of parking the car and handling the luggage check-in
process. It is also a good idea to call ahead to see if
your departure will be delayed so that the patient does not have
to sit for very long in the crowded, noisy terminals. Also
try to bring along something that will entertain the patient in
case you do have to wait.

If you and the patient are the opposite sex, you may want to bring along a
traveling companion the same sex as the patient for when bathroom
duties have to be performed. You can also ask for help from
the staff, or another option is to use adult incontinence
products during your trip.

Try not to do too many activities in one day. Plan for a single
activity, plus a couple of pre-selected alternatives in case you
have extra time. Be sure to give the patient time to relax
and settle down from one activity before going on to the next.

Try to keep meal times the same as when you are home so it won't be so
confusing to the patient. Be sure to order the same type of
foods you would normally serve at home.

Make sure you follow the same routine while you are traveling as when you
are home. For instance, if the patient is used to showering
in the mornings at home, make sure he or she gets their shower in
the morning while you are away.

Be sure to consider travel time when planning your trip. Stop and
think about how long the patient can sit in one place or if your
loved one likes to roam or wander.

Pack some familiar activities for your patient. Some examples are
magazines, a deck of cards or a wallet or purse to rummage
through. This may help keep the patient calm so that they
don't become agitated.

Check the airlines. Some airlines offer discount rates for an escort
for a person with disabilities. Be sure to inquire about
any special rates such as these.

By
using common sense and some of the above tips, it can be an
enjoyable family vacation for both you and the Alzheimer's
patient!

Thank you for all the sharing by the
DASN members in the last Ribbon. There is something that I would
like you to consider. As of now I know it is politically correct
for you to call people who care for others with dementia,etc., all
as caregivers. But, I would like you to consider shifting to the
word 'care partner'. Caregiver denotes that I as the person with
dementia am now totally dependent and taking, taking, taking --
and of course the reasoning is far an extension of just me.
Carepartner could also refer to a doctor, nurse, spouse, lifemate
-- anyone who has partnered with you in trying to make your life
better. My words are not very with it today, but I did want to
share this with you before I forgot again. You and the Ribbon
seem to be pioneers, and forward thinking . . . I hope
Carepartner is a term you will consider adopting in place of
caregiver - My best to you! - Mina

The Alzheimer's Disease International (ADI)
will be holding it's annual conference in Christchurch, New
Zealand on the 25-27th of October. The Alzheimer's Association of
Los Angeles and Orange County (California), are supporting and
sponsoring the attendance of a local woman, Jan Phillips.
Diagnosed 5 years ago at 45, Jan has become a strong advocate for
early stage patient services. As a founding board member of the
Dementia Advocacy and Support Network (DASN) she and fellow DASN
members will be presenting a proposal to the ADI, plenary
address, workshops for people with dementia (PWiD) and will also
have a booth and poster presentation promoting DASN and early
stage patient support and information. This is a pioneering move
for both the local Alzheimer's Associations and the ADI to
include, support and sponsor participation by persons with
dementia in the conference.

Editor's note: This is a great happening for Jan/Mina. We wish her a
safe and productive trip. The Alzheimer's Association is
finally coming to realize that they need support the patient as
well as the care partner. Congratulations to Jan and also
to The Alzheimer's Association.

Just a very brief note to say that the 'Signpost to Older People and Mental Health Matters
Journal' continues to develop and our readership increase. You
might like to let Ribbon members know that articles from our
latest issue, 'International Dementia Care', appear on-line at July
2001: International Dementia Care
http://signpostjournal.connect-2.co.uk/july1.htm

A massive amount of articles from back issues are also available
on-line, free of charge, as part of our non-profit making
philosophy of reaching out to informal (family) and formal (staff)
caregivers and providing them with up to date information and
ideas to support them in their role.

Thank you for your time and a wonderful on-line Newsletter.
With kind regards
Simon O'Donovan, Editor

I realize that everyone who reads this newsletter thinks that I
literally want to have an article in every copy. This is so
not true but when I feel there are things that need to be shared
I feel compelled to sit down and write. With the wonderful
circulation of this newsletter we receive what better place to
place information. Yesterday was no different from any
other day until I signed on the computer just before I went to
bed and read two postings on the AZ Bulletin Board. First I
cried because one of the postings was one that a dear friend of
mine had put up regarding her husband's status. The other
one was almost as compelling. I sat here and responded to those
postings with tears dropping off my face because you see they are
both in places that I can't even allow my mind to go. Would
our loved ones want to live in this manner? The majority of
us at some point in our marriage had talked about what we would
want regarding our health and the majority of us have Living
Wills in place to protect us from prolonging life. But how
many of you knew that if you weren't there when your loved one is
hooked up to all of this life saving equipment like breathing
machines, respirators, feeding tubes these Physicians think that
it is their primary concern to save this life. They do not
take into account what quality of life they are saving when all
of these heroic measures are being done. They are following
that Hippocratic Oath. Thinking with their hearts would be
inconceivable. Heaven forbid they don't keep this person
alive to have a repeat trip. I have seen it too much at the
nursing home. The family puts that loved one in the home,
doesn't do routine checks on them, they are called when they get
sick and are transported to the hospital. Rarely does
someone from that family ever go to the hospital so they are
patched up, filled with antibiotics and fluids and sent back to
the nursing home to lie in that bed in a fetal position,
oblivious to anything in the world around them. They are
given Ensure to keep the caloric count up and fed pureed food.
They are diapered and dressed by someone other than himself or
herself. They have absolutely no awareness of the
surroundings. This is all about the almighty dollar, not
about the quality of care. I will give you a prime example.

My parents were both in a nursing home. They both started
out in the same one but my father was a cold, unfeeling, uncaring
person and my Mother had been in the home years before he went to
live there. They were in the room together at first, and
then they had to be separated because he did not want to be in
the room with her. He proceeds to flirt and fall madly in
love with one of the nurses from the home and embarrassed my
Mother to death over his inappropriate behavior. They were
separated and Mother was moved to another nursing home.
Soon after she broke her hip and he got seriously ill. He
was put in the hospital in ICU and the brother and two sisters
there were told that there was nothing that could be done to save
him. There was a Living Will in place saying DO Not do
anything to prolong my life. The only one who could have
stood up to them and the Physician's was in Texas taking care of
her AZ husband. Now my brothers and sisters have never
bothered to learn about anything regarding living wills,
prolonging life or anything informative. Mother wasn't able
to be there so the living will was over ridden and he was placed
on life support for 9 days while he lay there and literally
rotted. They couldn't even show anything in the casket but
his face because of the deterioration of the body.

Now I suppose my siblings thought they were doing something that
would help. But in their hearts each one of them knew that
there was no way he was coming out of that coma and there wasn't
a single one of them strong enough to say No. So unless you
are there, standing toe to toe with your Physician regarding the
measures to be taken, they will take your power away from you.
It is done every single day of the week. I will never allow
any measure be taken to prolong my husband's life because we
decided a long time ago this wasn't what we wanted. There
will be no antibiotics, nothing. We all know the stages that they
progress through before they get to the point to where this
woman's husband was. Having to see him that way has to be
breaking her heart. She is being forced to do this now and
if she weren't there should he get worse and be transported to
the hospital then her decisions that they made together will be
overlooked. This is so wrong, but so true. Having a
living will doesn't mean crap unless you are there to see that it
is followed. You don't actually think that Doctor will take
time to check that patient's chart do you? Well, don't go
there. I can tell you that they don't and won't. I hope
this helps some of you who thing that just by having that piece
of paper will enable the safety net you have prepared be followed.
Because it doesn't.

Just wanted to stop in and say "THANKS!" for The Ribbon! Each and
every time I read it I find parts to very helpful in caring for
my mom who moved in with my family two weeks ago. All seems to be
doing ok at this point, I just pray that it continues. Again
thank you for the time you put into the Ribbon as it is so
helpful.
Margaret!

It
was so hot and steamy tonight I took my walk early, and I watched
the sun setting. It was a beautiful red ball of flame against the
clouds in the far west. Somehow it reminded me of my beloved Ann,
and my mind started to think in rhyme. As usual, I came home and
wrote out my thoughts. My, how I miss her!

Summer
Dream

A steamy eve in mid summer,
Sleepy dreams half in slumber.
Sun now setting red ball of fire.
Thunder is distant a storm to sire.